Palliative & End of Life Care

 

Receiving a terminal diagnosis for yourself or a loved one can be an incredibly challenging moment. Facing the choices that lie ahead can be really overwhelming, but you are not alone. We hope that by exploring this page, you'll find solace, comfort, and the strength to move forward in a way that feels right for you and those close to you.

Our goal is to provide you with the knowledge and resources that may help you to navigate the complexities of end-of-life & palliative care, whether you have a diagnosis, are a caregiver, or are simply seeking information. On this page, we hope you'll find helpful guidance, practical tips, and a wealth of resources that prioritise comfort, dignity, and emotional well-being during this sensitive time. 

 

What is palliative care?

Palliative care offers physical, emotional and practical support to people with a terminal illness. You may be offered palliative care at any point after a terminal diagnosis.

Palliative care is treatment and care which focuses on:

• managing any symptoms
• offering emotional, spiritual and psychological support
• offering practical support, including planning for the future or getting equipment
• giving you a good quality of life.
  

Rather than curing the illness, it aims to make sure you feel supported and comfortable. For help and support in your area: 

• Palliative care – Belfast Health and Social Care Trust(external link opens in a new window / tab)
• Palliative care –Northern Health and Social Care Trust(external link opens in a new window / tab)
• Palliative care - Southern Health and Social Care Trust Trust(external link opens in a new window / tab)
• Palliative care - South Eastern Health and Social Care Trust(external link opens in a new window / tab)
• Palliative care –Western Health and Social Care Trust(external link opens in a new window / tab)

 

What is End of life care?

End of life care is for people who are thought to be in the last year of life. This timeframe can be difficult to predict, so some people might only receive end of life care in their last weeks or days. And others may have end of life care for longer.

End of life care aims to help you to live as comfortably as possible in the time you have left. End of life care is a part of palliative care. But palliative care as a whole can last for much longer and is broader. You can have palliative care for some time before getting end of life care. 

Different health and social care professionals may be involved in your end of life care, depending on your needs. These professionals may include:

• hospital doctors and nurses
• your GP
• community nurses
• hospice staff
• counsellors or therapists
• social care staff
• chaplains (of all faiths or none)
• physiotherapists
• occupational therapists
• complementary, holistic or alternative Therapists

 

Things to think about after a terminal diagnosis

 

• Gather information: Take the time to understand your diagnosis, prognosis, and all the available treatment options.
• Communicate openly: If you feel able, share your diagnosis with loved ones, and engage in open and honest conversations about your feelings, fears, and end-of-life preferences.
• Planning your future care (Advance Care Planning): Consider creating an advance healthcare directive, which outlines your healthcare wishes if you become unable to make decisions. This document can provide peace of mind and ensure your preferences are honoured. You and your healthcare team can review this document regularly, to make sure it’s still what you want.
• Build relationships with your healthcare team: Meet and get to know your healthcare team and palliative care specialists who are experienced in providing end-of-life care. They can help manage your symptoms and provide emotional support.
• Explore hospice care: Hospice care may also be an option, depending on your needs and the services your local hospice offers.
• Think about your life goals: You may want to reflect on your goals for the time you have left. What experiences and moments are most important to you? You could make a list of things you'd like to accomplish or experience.
• Create a support network: Lean on family, friends or other people around you for emotional support. You could join a support group or engage with a therapist or counsellor to address your emotional needs.
• Sort out practical matters: Address financial and legal matters, such as updating your Will, creating a living Will, and setting up a Power of Attorney for healthcare and finances. You should review and update your Will at least every five years, or whenever things change.
• Start to create memories: Think about planning special moments or creating lasting memories with loved ones. Consider taking trips, sharing stories, or engaging in activities that bring joy.
• Ask about complementary therapies: Complementary therapies like acupuncture, massage, or relaxation techniques help some people to manage symptoms and enhance overall well-being.
• Embrace emotional support: You may want to talk to someone about your diagnosis. Support could come from professionals, friends, or spiritual advisors. If you need extra support, it’s important to seek therapy or counselling.
• Stay informed: Stay up to date with clinical trials and alternative treatments that may offer improved quality of life.
• Cherish time with loved ones: Spend quality time with your family and friends, focusing on the moments that matter most to you.

 

Remember, this is your journey, so it's essential to make choices that align with your values and goals. You can seek support from healthcare professionals, spiritual or faith leaders, charities, friends, family and others. You are not alone, and there is help available to help you get the care and support you need.

 

 

Helpful Resources

 

 

Links 

 

• Marie Curie - Planning Ahead Booklet: You may not feel like planning ahead when you’re ill, but thinking about the future now and making your wishes known will help you feel more in control. It can also help those close to you handle your affairs if you aren’t able to. This booklet has information about some of the things you might want to think about, like deciding where and how you want to be cared for or making a Will. (PDF DOWLOAD)
• Marie Curie - easy read booklets use simple words and pictures to help you understand information for those living with a terminal illness, and their family, friends and carers. (WEBPAGE OF DOWNLOADS)
• Marie Curie - Marie Curie's Online Community is a space for you to share your thoughts, feelings, and experiences with others from the comfort of your own home. You can chat with other members who are affected by terminal illness, including those who are bereaved. It’s free, available to anyone 24 hours a day. (WEBPAGE)
• NHS - Choosing where you have end of life care: If you are approaching the end of life, you may be offered care in a variety of settings. A palliative care team should try to organise for you to be cared for according to your wishes, whenever possible. (WEBPAGE)
• Macmillan Cancer Support - Preparing a child for loss (WEBPAGE)
• Marie Curie - On the Marie Curie Couch Podcast. Listen to Well Known Guest speakers talk about their experience of death and dying. (WEBPAGE)
• The Art of Dying - In this series of podcasts the Art of Dying Well helps people to talk about dying in an open and honest way. (WEBPAGE)
• Hospice UK - Dying Matters Podcast: There are 16 episodes of the Dying Matters podcast, discussing everything from the importance of music at the end of life to tackling racism in palliative care. (WEBPAGE)
• All Ireland Institute of Hospice and Palliative Care (AIIHPC) - Positively Palliative, Stories of Care, Loss and Love: A heartfelt collection of personal stories, poems, and notes explores the courage, love, and understanding experienced in navigating this challenging process.
• GOV.UK - Get benefits if you're nearing the end of life. This government page will give you all the information you need on benefits if you're nearing the end of life (WEBPAGE)
• UK National Institute for Health and Care Excellence (NICE)- Providing care for people who are dying, and supporting the people who are important to them, are profoundly important. This link to information for the public describes the care that people should receive in the last 2 to 3 days of their life. (WEBPAGE)
• More Coming Soon... Do you have any suggestions? If so, let us know by Joining The Conversation at the bottom of this page!

 

 

Books

 

• Everything You Need to Know When I'm Gone by Ava Brinley - End of Life Planner for Affairs and Last Wishes: This 52 page workbook has room for all of the most important things that your family and friends will need to know in the event of your death. (AMAZON.CO.UK)
• For you when I am gone by Rabbi Steve Leder - When we think about getting our affairs in order, we often think about writing wills, but do we think about our ethical wills? In this book, Steve asks us 12 questions that can help shape the life story we want to leave behind. And more so, it gets us thinking about the life we’re currently living. (AMAZON.CO.UK)
• With the End in Mind: Dying, Death and Wisdom in an Age of Denial by Kathryn Mannix - In this unprecedented memoir, a palliative medicine pioneer explores the biggest taboo in our society and the only certainty we all share: death. Kathryn Mannix immortalises the thousands of men and women she has seen off. These unforgettable stories send an urgent message to the living, answering all our questions about the end-of-life process with touching honesty and humanity. (AMAZON.CO.UK)
• Glimpses of Heaven: True Stories of Hope and Peace at the End of Life's Journey - This collection of more than 40 true stories of Harris's patients offers readers an incredible glimpse at what lies beyond and what the living can learn from the dying. She has been with hundreds of patients as they took their last breaths and knows the kinds of questions that both the dying and the loved ones they are leaving behind ask. (AMAZON.CO.UK)
• A Matter of Death and Life: Love, Loss and What Matters in the End - Internationally renowned psychiatrist and author Irvin Yalom has devoted his career to counselling those suffering from anxiety and grief. But never had he faced the need to counsel himself until his wife, esteemed feminist author Marilyn Yalom, was diagnosed with cancer. In A Matter of Death and Life, Marilyn and Irvin share how they took on profound new struggles: Marilyn to die a good death, Irvin to live on without her. (AMAZON.CO.UK)
• More Coming Soon... Do you have any suggestions? If so, let us know by Joining The Conversation at the bottom of this page!

 

Videos

 

 

• Dr Kathryn Mannix - Dying for Beginners: A short animation by Emily Downe, and voiced by Dr Kathryn Mannix which guides you gently on a step by step journey through the process of dying.
• Marie Curie- What to expect at the end of life, British Sign Language version: Nurse Maria describes the common changes that you might notice in someone’s last weeks, days and hours of life.
• Compassionate Communities NI - Advance Care Planning, the importance of planning ahead: A light introduction to Advance Care Planning. The main character 'Tom' highlights the importance of planning ahead for end of life by making decisions on the 4 components of ACP: personal, clinical, financial and legal.
• More Coming Soon... Do you have any suggestions? If so, let us know by Joining The Conversation at the bottom of this page!

 

Helplines

 

 

 

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Find Help Near You 

 

There are many support agencies in Northern Ireland who specialise in providing support to people impacted by a terminal illness or medical issues resulting in end or life or palliative care. Please remember that you are not alone and that there is help available.

 

 

 

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